On the nature of rehabilitation

This is a very personal post today. I’m almost at the end of a 14 month rehabilitation programme to recover from postconcussion syndrome. 26 February 2007 I hit my head on the edge of the door of our 4WD when I was getting in. I had pushed myself up on the door frame and must have been moving at some velocity and hit the very top of my head, stunning myself for probably a good 20 minutes.
Initially I didn’t recognise that I’d been concussed, but after spending some of the night feeling very nauseated, having difficulty staying awake over the next two days, and a thundering headache, I dragged myself off to my doctor. She immediately told me to stay off work for a fortnight, and that started the process of my rehabilitation.

I’m incredibly grateful for our Accident Compensation Corporation in NZ, as I got income compensation after the first week, but more importantly, I had excellent case management from the start and was referred to the Concussion Clinic for a comprehensive assessment. This involved being seen by a neuropsychiatrist, neuropsychologist, and occupational therapist – and guess what? I had a raft of attention, memory, concentration and higher executive function deficits that made everyday life really difficult. Oh and I needed to sleep every day for over an hour. As a result of these assessments, I saw a great occupational therapist and the psychologist and had some great input regarding activity scheduling, energy conservation, and ways to work with my reduced attention capacity. I found I couldn’t multi-task, which was a real challenge as a mother and in my job!

My return to work programme consisted of initially very supportive meetings between my manager and the workplace rehabilitation advisor – and I started on a few hours and selected duties, and began the slow path to returning to ‘normal’.

What I hadn’t realised was the incredible impact postconcussion syndrome has on so much in life. For me I had trouble with driving, doing grocery shopping, cooking, concentrating when there was noise or lights or lots of people, holding a social conversation in a group, following a conversation, having a normal leisure life with my partner, balancing his needs and my needs and the needs of my children – oh and work.

As a result of my enthusiasm to return to work, I increased my hours quite quickly – but as I began to have more difficulty coping with the multiple demands on my attention at work, and my life outside work, I began to quietly fall into a depression. Now I have been treated for depression for most of my adult life, so this wasn’t entirely unexpected, but what was unexpected was the sudden change in attitude from some people. Somehow I wasn’t progressing the way I was expected to progress. I was in fact reducing my hours at work, and withdrawing from most of my home responsibilities, and having more trouble managing the sense of guilt at being unable to meet my relationship responsibilities, at not being as competent at my job, at dropping the ball with administration, and in being less able to tolerate my children’s demands and the normal activities that are part of life.

I wasn’t surprised that I felt depressed, and once I’d reduced the demands on myself, my rehabilitation began to progress again – but that tightrope walk across the lines strung between work, home, relationships – that was much more precarious than in the first few months. And especially the loss of trust and support that I’d had at work initially really hit me hard. I have to hasten to add that the clinical team I work with – WOW! what amazing support and encouragement they have given me! It’s been more the loss of encouragement and accommodation from my manager and the reduced frequency of rehabilitation meetings, and the ongoing querying of motivation, to the point where my honesty and integrity, I felt, were being questioned.

Over the past month I’ve been reassessed and yes! I’m ‘normal’, sorry what I mean is, I’m testing within the normal range on the neuropsychological tests I’d previously not done well in. I’m feeling so much better in myself, have more ability to multitask, have even done the grocery shopping without feeling too stressed, and my daytime sleeps have reduced to only every now and then.

I’d like to say my job situation has also improved, but while I feel I can manage more, I’m now going through some issues with performance and support that mean I could very well be ‘moved aside’ to another job not in pain management. Despite probably needing only two more months of support. The stress from that has made me feel quite vulnerable again, and I need to lean on my partner and family and therapists to help me keep going.

So, what have I learned? Well, I’ve always been quite fervent that returning to work is a key component of rehabilitation, and that the workplace is part of therapy.
What I’ve learned is that balancing the demands of the workplace with my other responsibilities in my life such as my partner, and my children and yes, even my own needs, is incredibly difficult. So often I’ve had to put my partner’s needs aside so I can cope with work. Or had to say to my kids ‘I can’t see you now, I need to rest’, or had to not attend a social event – even had to hear people say ‘you can’t use your concussion as an excuse all the time you know’ – when it’s the fatigue and headache and need to pour my best energy into work that has made these other, really important parts of my life have second best.

I’ve also learned that my team are incredibly supportive. That without them encouraging me that I am still valuable to them, that what I offer them is important, I wouldn’t have made it.

I’ve learned the importance of telling people I’m working with ‘you will get better’, ‘it will take time, but people do recover’, ‘life does improve’. That has kept me going so often.

Sadly I’ve learned that rehabilitation feels like I can never have an ‘off’ day, that the normal ebb and flow of being at work does not apply during rehabilitation. You know the days, where you are at work but not really ‘at work’. I’ve found that I’m always ‘on show’ at work. And that is something I am definitely going to remember in my work with people as a therapist. I’ll remember to make allowance for ‘off days’.

I don’t know whether I will be returning to my usual job. That’s an issue that is currently up in the air. I know I’m capable of it, and that I really want to return to ‘normal’ so that the spotlight can, for a time at least, go off me and my performance. I’m just happy that despite the anxiety of my job situation – MY BRAIN IS BACK!!! I’m finally getting better!

Recovering from brain injury is a process I hope I don’t have to go through again. But I hope the lessons I’ve learned through it, I keep forever.

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4 comments

Thanks for sharing your story with us, and I’m glad you’ve recovered. I have found that going through my own pain condition, while in no way fun, really helped me become a better doctor, and helps me better understand my patients with pain.

Thanks for that – I agree, having an experience like this (and I have fibromyalgia too) helps me remember that all of us respond to challenges in life differently. Although I might know things in my head, actually doing them is as much a challenge for me as it is for anyone else! So I think I’ve learned so much from having a disability. And really, disability is no more than acknowledging that there are some things we can’t do, which is true for all of us over different things.

You’re incredibly lucky to have an access to a post neurotrauma rehabilitation program. My mom never had such a chance. My mom and I lived in scenic Pennsylvania. I acted in local theaters and went to school. My mom worked in finance and ran her small business. All until September 2006 when my mom suffered a traumatic brain injury. ER Doctors in a local hospital chose not to treat her brain trauma and sent her home. Overnight she developed uncontrollable jerking movements, shakes, tremors and slurred speech. Every muscle in her body and face was twitching. The Abington Memorial Hospital doctors treated her symptoms, once again ignoring the cause, which was TBI. Medication they gave my mom “to stop shaking” caused her go into convulsions, coma, and a cardiac arrest. During CPR my mom’s heart was dislodged and turned around. After the cardiac arrest she wasn’t able to keep balance, walk or speak.

Our relatives and friends all around the world asked their neurologists about these symptoms. The communal wisdom was to start taking Piracetam or Levetiracetam for hypoxic-anoxic brain trauma and encephalopathy. My mom asked her community hospital neurologist about this treatment. His response was that he was not familiar with the foreign medications. It took four long agonizing months before my mom was diagnosed with action myoclonus. A year later she developed a seizure disorder. Now she takes Keppra (Levetiracetam) for seizures and myoclonus, and Requip for parkinsonism, shakes and tremors and slurred speech. My mom’s story demonstrates that when it comes to Traumatic Brain Injures ignorance of American medical professionals is startling.

That is so sad to hear…. TBI is a complex area, and I know very little about it, except my own experience and the people I’ve worked with who have chronic pain as a result of TBI. It so profoundly affects who you are that I can’t comprehend how difficult it must be for your mother and your family to cope. Thank you for sharing.